It’s the most common genetic life shortening disease in the United States. Cystic fibrosis affects about 40,000 people in the U.S. Cystic fibrosis, or CF, is a genetic mutation from both parents causing a lot of sticky mucus to be accumulated in the lungs. Patients can develop chronic pneumonia and bacterial infections.
Mother of twin boys, Karey Baker, remembers the day when both of her sons were diagnosed with the disease. “It was devastating. It was life changing. I was a mom before CF and I was a mom after CF.”
Her two sons, Brent and Evan Baker, were 15 months old when they were diagnosed. Today, they are 12 years old, living, what they feel, is a normal life. “It’s kind of hard to do treatments a lot, but it’s kind of normal,” said Brent.
Every morning and every night, the boys have to do an hour and a half of breathing treatments, followed by high calorie meals and snacks throughout the day. “I’m constantly adding, butter, ranch dressing, and salt. They have to eat snacks three to four times a day. They drink protein shakes in between,” said Karey.
Dr. Patrick Maeng, a pediatric pulmonologist on the medical staff of Golisano Children’s Hospital of Southwest Florida, says new advances in treatment are now offering patients with CF a better quality and quantity of life.
But patients must be dedicated to their treatment and maintain their health with exercise and high calorie foods. “It’s a combination of breathing treatment therapies, a lot of patients will be on antibiotics every day, some will have inhaled antibiotics,” said Dr. Maeng.
Patients with CF are at risk for contracting life threatening bacteria. “Pseudomonas is a common bacteria that is everywhere in the environment and it doesn’t really affect people without cystic fibrosis. But if you have that disease it can really decrease your lung health over time,” said Dr. Maeng.
Karey Baker says her boys have never missed a breathing treatment. They are also very active in swim team, which keeps their lungs strong, helping them fight off infection.
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